Keeping Young Patients With Congenital Heart Disease Connected to Care

Keeping Young Patients With Congenital Heart Disease Connected to Care 150 150 Mary Bates, PhD

Race, type of insurance and severity of disease affect likelihood of experiencing a lapse in care for CHD patients younger than 5 years.

Lapse in care is prevalent among congenital heart disease survivors by age five, with nonwhites demonstrating elevated risk, according to a new study from Nationwide Children’s Hospital researchers. Medicaid patients and those with less severe diagnoses also had an increased risk for lapse in care.

Medical advancements over the past 20 years have allowed more people with congenital heart disease (CHD) to survive into adulthood. For these individuals, routine surveillance and follow-up care by a cardiologist are critically important. However, lapse in care among CHD survivors is common.

While most of the literature focuses on lapses in care during the transition from pediatric to adult care, the new study, published in Congenital Heart Disease, sought to determine the rate of lapses in care in CHD survivors through age five.

“Our population consisted of patients who had moderate or complex CHD, which often requires immediate intervention at birth or soon after birth,” says Jamie Jackson, PhD, a principal investigator in the Center for Biobehavioral Health at The Research Institute and The Heart Center at Nationwide Children’s Hospital and the study’s first author. “We wanted to see if these patients stay in the system.”

Analysis of the electronic medical records available through Nationwide Children’s revealed that overall, 75.7 percent of patients experienced a lapse in care, with only 41.6 percent of those returning by age five.

Nonwhites had a greater risk for lapse in care and tended to leave the system earlier. Additionally, Medicaid patients and those with CHD diagnoses of moderate severity had an increased risk for lapse in care.

“Disease severity ended up being one of the strongest predictors of lapse in care, with folks that have less severe disease at greater risk,” says Dr. Jackson, who is also an assistant professor of Pediatrics in The Ohio State University College of Medicine.

“This could be because it seems like they are doing well, and if that is the explanation, there might be a lack of understanding about the importance of regular care at the time of initial intervention,” she says.

Dr. Jackson and her colleagues don’t know the reasons behind the racial disparities. Their analysis showed that insurance type is part of the picture but does not account for the racial differences identified. Based on racial disparities found in other disease populations, they speculate that nonwhite patients may receive different messages about the importance of follow-up care than white patients, or they may be less satisfied with their care.

“The takeaway message to medical providers is that we know we lose patients for some reason in these early stages and for clinic staff to be mindful of that – and to be particularly mindful of the fact that we might especially lose individuals from nonwhite families and patients with less severe disease,” says Dr. Jackson.

“More prospective research is needed to figure out what might explain these initial lapses in care so we can identify appropriate interventions to keep patients in the system.”


Jackson JL, Morack J, Harris M, DeSalvo J, Daniels CJ, Chisolm DJ. Racial disparities in clinic follow-up early in life among survivors of congenital heart diseaseCongenital Heart Disease. 18 Dec 2018; [Epub ahead of print]

About the author

Mary a freelance science writer and blogger based in Boston. Her favorite topics include biology, psychology, neuroscience, ecology, and animal behavior. She has a BA in Biology-Psychology with a minor in English from Skidmore College in Saratoga Springs, NY, and a PhD from Brown University, where she researched bat echolocation and bullfrog chorusing.